Enjoyment of life trumps fear of falling

Day by Day: Enjoyment of life trumps fear of falling

By LIZ THOMPSON
Feb 24, 2019
This Week News

It’s all relative.

As I listen to my daughter Mary’s busy schedule with her children, who are now young adults, I could see my own life as dull in comparison. But I do not.

I love that she is taking on new ventures in music and volunteering. She always has had a generous spirit — one of the many things I love about her.

Her challenges are different than mine. Each of us has things that push our limits in various ways — sometimes to the point we just want to crawl back under the covers and sleep a little longer.

I have lived with multiple sclerosis my entire adult life. Fourteen years ago, walking outside without a cane or walker became too risky. Falls have become my unwanted companion.

When I walk our dog, I use one of my scooters. Some people say it almost looks like he is pulling me, like a sled dog. That’s extra funny when you know my dog is a dachshund. I’m glad the sight makes people smile.

But one of my MS challenges is to stay upright and keep my legs strong. When I bought my first walker, the owner of the Arizona store had MS. She said she started using a scooter too early. I didn’t understand completely at the time, but I do now.

She told me that she should have kept walking, no matter how difficult, and used a scooter only when needed.

What I truly miss is walking easily for the sake of enjoying the outdoors or for exercise.

If I walk far, or on uneven surfaces, the risk of tripping gains momentum. When I shop, it helps to use a scooter if I’m going far.

Last year, I challenged myself to walk holding onto a cart in large stores, such as Sam’s Club. I wanted the exercise, and I wanted to walk. In smaller stores I am familiar with, I started taking my walker.

When my husband walked along with our dachshund and me last year, instead of using my scooter, I started using my walker. I had to let go of the worry that I looked older than my years.

I know all our street’s sidewalk bumps and anticipate, slow down, lift my walker and keep going.

Soon, I realized that if I held my husband’s arm and had a cane in the other hand in case I needed it, I could just walk. Our dog actually seemed to notice the difference, and his step was a little perkier when he wasn’t stopping to sniff every blade of grass.

The scooter provides a safe way to move about. That’s smart. But I, too, may have stayed in that scooter a little too long without alternating to my walking options.

For those of us who have fallen, after each incident, the fear of falling again can almost incapacitate us. I struggle to release my fear and keep moving.

With each fall, I evaluate why it happened and what, if anything, I can do to prevent another similar incident.

Falling, like MS, is unpredictable.

March is MS Awareness Month. Like the hundreds of thousands living with MS, we crave understanding without making it the focus of what others see in us.

My daughter’s challenges seemed so much more interesting when compared to me walking to the corner and back holding my husband’s arm.

But, as I said, it’s all relative.

Our grandson, Andrew, joined the Ohio Army National Guard and is at boot camp as I write. When he came home for Christmas and New Year’s break, many of us greeted him at the airport.

I took my walker. It was worth it to walk safely and have some modicum of control.

Andrew told me he was outside for drill when the first snow came. He thought, “The first snow! I should call Nana!”

Since he was young, every year, we call each other when the first snow appears. When he said this, standing there in his fatigues, I looked up and smiled.

My life is not boring.

 

Advertisements

Those with MS appreciate help, understanding

Day by day

Those with MS appreciate help, understanding

By LIZ THOMPSON

This Week News
Tuesday March 8, 2016

When people see me walking with a cane, they typically ask if I had knee surgery. Or they might ask why I use a cane.

My answer, “I have MS (multiple sclerosis),” usually elicits, “Oh, I’m sorry.”

How could they know?

Each time I hear this response, I’m reminded that MS is invisible. I guess you could say I look normal, whatever that is.

The 2.3 million other people worldwide living with MS must look “normal,” too.

So every March, during MS Awareness Month, I write about it.

Why should people care about MS if they don’t have it and don’t know anyone who does?

Hopefully, to gain understanding and to think twice before criticizing a stranger who uses a motorized cart in a store (yet looks “normal”), walks into a display (been there, done that), or has trouble navigating a curb or step.

I don’t drink alcohol by choice, but when I walk, I can look like I’ve had “one too many.”

We can use a gentle offer of help and will be grateful for it.

MS is an unpredictable, often-disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

MS has what I call the frayed-wire effect. A frayed lamp cord often leads to flickering lights.

The covering of nerves, called the myelin sheath, is damaged by MS when the body attacks it, thinking it’s a foreign substance. So MS nerves have segments that are damaged, and the brain-to-body command is disrupted.

Instead of a flickering light, we have trouble walking or moving our hands and arms. We may have spasms, trouble thinking, numbness, balance issues and vision loss, among other symptoms.

In 1987, I lost most of my vision, had numbness in my limbs and couldn’t walk a straight line. Severe fatigue made putting one foot in front of another difficult.

After eight months of medical observation, an MRI led to a diagnosis of MS.

Doctors suspected I was having a series of strokes or had a brain tumor — though the tumor was ruled out early on — so I was relieved to hear MS. I was only 36. Most people are diagnosed between ages 20 and 50.

Once I knew MS symptoms, I looked back and realized I’d had MS since at least age 22.

Prior to 1980, the average time from a person’s first symptom of MS until a definite diagnosis was seven years. The MRI reduced the time to six months.

Before MRIs, when a doctor suspected MS, patients underwent a standard neurological exam and medical history, then sat in a warm bath for a period of time. If they were weak and had other symptoms, they could be diagnosed with MS. Heat is an enemy of MS, causing pseudo flare-ups.

When I was diagnosed, there were no MS drugs and no Internet to research the disease. There are now 13 disease-modifying drugs to reduce disease activity and progression for people with relapsing/remitting MS, the most common type.

In 2010, the National Multiple Sclerosis Society set out to raise $250 million.

This money launched 818 new research projects, 71 clinical trials, 141 projects testing rehabilitation and wellness approaches, and 137 grants to train promising MS researchers.

When people ask how MS affects me the most, the first thing I usually say is that I can’t just decide, “I think I’ll take a walk,” and step outside to do just that. But I refuse to give up, give in or become a miserable grump. I adapt.

MS is an unpredictable disease that can change in a heartbeat. When we put our feet on the floor each morning, if in fact we can do that, we don’t know for sure if our legs will work, at least well enough to carry us through the day.

A strong arm or helping hand is appreciated.

Knowledge is power, as the MS society says.

After all, we’re all just “normal” people getting through life one step at a time. We’re not alone in having something to deal with, invisible or not.

For more information about MS, go to nationalmssociety. org/chapters/oha.